News for Patients

This Policy Roundtable, organised by the European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria (ESPKU), was hosted by MEPs Deirdre Clune (Ireland, EPP) and Nessa Childers (Ireland, S&D).

The EU legal framework for medicines for human use is intended to
ensure a high level of public health protection and to promote the
functioning of the internal market, and includes measures that
encourage innovation.

RD-Connect is an EU-funded integrated platform connecting databases, registries, biobanks and clinical bioinformatics for rare disease research. Together with the ERN EURO-NMD, RD-Connect is organising a series of webinars aiming to train ERN members at all levels. The webinars will let you learn how the RD-Connect tools can help you in your everyday work.

We are glad to announce that our MetabERN Coordinator, Professor Maurizio Scarpa, has been recently invited to speak at an event that Genetic Alliance UK, the charity supporting all those affected by rare, genetic and undiagnosed conditions, hold on Monday 9 July.

Metabern Newletter

MetabERN is one of the 24 European Reference Networks (ERNs) approved by the ERN Board of Member States.
The ERNs are co-funded by the European Commission.
For more information about the ERNs and the EU health strategy, please visit ec.europa.eu/health/ern